51 months TSW and a Belated Happy New Year!

During the horrific early months and years of TSW, the nights were so dark,  long, and lonely, and the days–though welcomed because of the light–were just as draining and frustrating, with no end in sight. Now here we are, four years later, and I’m amazed how fast the time has flown by!  Brian started TSW as a 10 year-old fifth grader, and he’s now a 14-year-old 9th grader.

          September 2013 ^^^just before TSW  September 2017^^^51 months TSW

How’s he doing? Well, the cold, dry winter atmosphere has resulted in the usual dry skin; the added experience of being a freshman has contributed to increased stress scratching; and cat dander still results in itching, red patches, and allergy symptoms (benadryl to the rescue!). However, the last few TSW signs/symptoms I’ve been monitoring–red sleeves, oozing, elephant skin, profuse skin shedding–have not recurred this time. Now, of course he gets the skin flakes from the dry skin, but it doesn’t result in tablespoons of skin on the sheets in the morning. In fact, my arms are getting flabby because I’m no longer changing and shaking out sheets every day. I’ll exchange flab for TSW any day!

PLEASE REMEMBER: Each person, every BODY is different, in the responses and reactions to medications and in the body’s ability to heal. The original skin condition for which you or your child started topical steroids may re-emerge as the TSW process proceeds and comes to a close. Some kids and adults are fortunate enough to go through TSW and have good-looking skin and perhaps no more eczema at the end. However, this is not everybody. SO, don’t feel like a failure or that “it’s not working for you” just because your skin is not blemish-free and baby-soft at the end of your journey. TSW is a process where the body heals from the accumulated adverse effects of topical steroids, and it can take months to years; It is NOT a cure for eczema or the original skin condition. We have seen in the forums that some people are still having flares or recurrence of TSW symptoms even after 5 years of stopping TS. Why? I don’t know. It needs to be researched, and this is why it’s so important for you to tell your story to doctors, the FDA, the media, etc.

I posted Brian’s most recent progress photos in Pictures. Certainly, the skin is NOT perfect, nor will it probably ever be because dysfunctional skin is in his genes, thanks to me and my hubby. He also probably still has atopic dermatitis–which he chooses to manage without steroids and by not worrying about it. However, he is healthy and active and living life. What more can we ask for our child? 🙂

If you are just starting on this TSW journey, you are not alone. It’s a long, painful, difficult rollercoaster process, but for the health and welfare of your child and/or yourself, withdrawing ineffective topical steroids is essential for the body to heal. In addition, appropriate skin/wound care, nutritional, medical, and psychosocial support are needed to address the signs, symptoms, and sequelae of TSW. Find a knowledgeable or at least open-minded doctor who can support you during this process and communicate with others who understand what you’re going through.

You do have hope for healing!

“I can do all things through Christ who strengthens me.” Philippians 4:13

How to see progress at 21 months TSW when healing seems stalled

If you are just starting TSW or thinking about starting TSW, please read this and this  carefully. Also, you may want to refer back to the March 2014 Log entries and posts for pictures and information that may more closely reflect your current position in this TSW journey.

For those nearing the 18 month or 2 year mark, you may understand what I’m sharing. Brian started this journey as a 10 year old, and he is now 12. We are going on Brian’s 21st month free of topical steroids (TS), and he is 125% physically and functionally back to normal, no longer needs benadryl/zyrtec, can pretty much sleep through the night, and has not had an infection requiring antibiotics in nearly 2 years. However, the recovery from TSW, in terms of “come and go” full-body skin signs and symptoms if itch, rash, and shedding continues. This makes me feel like last year was better.

I remember June-August 2014 (months 8-10 TSW) being a huge breakthrough: clear-skin, itch-free, shed-free, and sound sleep for Brian–especially the month of July. A three-month span of incredible normalcy which we had never experienced since he was 17-months-old. And now, July 2015, though the shedding finally slowed again, he continues to scratch periodically during the day and some at night, occasionally waking–not too long– because of the itch, and his skin is marked with scattered scratches and sporadic erythema or rashy areas. Then the next morning, it doesn’t look as bad as it looked the night before, and I think, “His skin and itch were so much better last year!”

SO, I go back to read my blog and log entries for this time last year and compare them to now, and this is what I found regarding skin and itch:

MONTH/YEAR             SCRATCH SCALE (grossly throughout the day)
July 2014                     Generally 2/5 to 3/5 then <2/5 towards end of July 2014

July 2015                      Generally 1/5 to 2/5 and more days with episodes of 0/5 to 1/5
                                      lasting 1-4 hours at a time. Occasionally a 3/5 episode at night.

Lesson for me: my memory sucks and I shouldn’t rely on it! Thank goodness I made a scratch scale, took pictures, and wrote down descriptions of Brian’s signs and symptoms, documenting his treatments and progress. Otherwise, today I would have nothing but distorted memories with which to compare his current condition, and I’d feel like minimal progress has been made. Overall, the itch and scratching episodes have decreased in intensity, frequency, and duration. This year is better than last year.

Lesson for you: Document. Take and date pictures. Use objective measures so when you feel like nothing’s happening, you can look back at your data and see just how far you’ve come.

Get a supportive doctor. Stave off infection. Treat the symptoms. Scratch sensibly. Be patient. Give thanks. Keep the faith. Beyond the itch, healing does happen!

“I can do all things through Christ who strengthens me.” Philippians 4:13

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July 13, 2015   DAY 647  Pictures after return from SD. Used QD light moisturizing with coconut oil on torso/face and Stephanie The Home Apothecary’s Breezy Balm on extremities.

IMG_1660 IMG_1662 IMG_1663 IMG_1664 IMG_1665 IMG_1666 IMG_1668 IMG_1669 IMG_1670 IMG_1671 IMG_1672 IMG_1673 IMG_1674 IMG_1675 IMG_1678 IMG_1679 IMG_1680 IMG_1681

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The pictures above are after recovering from a several-months-long flare involving return of lower extremity red sleeves, night scratch-waking, and teaspoons of shedding.

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Less than 1/16 teaspoon shedding. Compared to 1/2 and 1 tsp measuring spoons.

New “TSW Research Group” site

I started a separate blog/website called “TSW Research Group” to house independent research on topical steroid withdrawal (TSW) in children.

https://tswresearchgroup.wordpress.com/

So far, there are 2 items worth showing your pediatricians and dermatologists to at least get them thinking that topical steroids (TS) do have more adverse effects than the TS manufacturers would have them believe.

I’ve added Brian’s case study on the TSW Research Group site to go along with the systematic review of TSW in children. Still waiting for Dove Press’ decision on the review. Prayers appreciated.

Happy reading!

Plugging along at 20 months TSW

A few minutes ago, Brian called me from a friend’s house asking if he could stay for a sleepover. I said, “How do you feel?” He said, “I feel great!” I said, “OK, what do you need?”

Ahhh. Finally! a short, sweet conversation without TSW being the focal point of decision making. A few weeks ago, that would have been a “Not yet” because he was still snowing like a blizzard (shedding skin) and scratching hard enough to disrupt sleep. We’d discuss the shedding, sheet changing, clothing, skin care, bathing, scratch management, moisturizers, etc. My understanding but disappointed son would walk away praying for better days.

Maybe they’re here. Since school ended 2 weeks ago, his feet have been improving and the scratching has overall decreased. We’re hoping he’ll have a nice “skin and itch break” like he did last summer.

6/16/15

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more feet pics

May 17, 2015

May 17, 2015

June 17, 2015

June 16, 2015  compared to–>

Brian missed most of 5th grade due to TSW. This year, he completed 6th grade with perfect attendance and all A’s for the year. Itch or no itch, he’s going to have an A+ summer as well!

Don’t let TSW keep you down!

6/12/15 last day of 6th grade

6/12/15 last day of 6th grade

“Blessed is the man who perseveres under trial, because he has stood the test, he will receive the crown of life that God has promised to those who love him.” James 1:12

A systematic review of topical steroid withdrawal in children

Two great things happened this weekend.

1) Brian and his Virginia Breeze Elite teammates brought home another championship! They played 2 games on Saturday and 4 on Sunday to repeat as the Triple Crown Virginia State Champions (11u this year). Great weather, great company 🙂

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2) After 3+ months of work and neglecting my hubby and son, I finally completed and submitted my manuscript on “A systematic review of topical steroid withdrawal in children diagnosed with eczema” to an online journal. At 10,471 words, 5 figures, 19 tables, and 53 pages double-spaced, I was a “tad bit” over the 7500 word count, but the publisher was kind enough to make an exception to take a look at it.

Thankfully, this journal also allows the author to post the paper on a website while they decide on rejecting or accepting it. You can see the PDF here .

Whether it is “officially” published or not, at least I can get the information out there where patients, doctors, and researchers can access it, and now I can enjoy the rest of my summer watching my husband pace as we watch Brian and the Breeze boys play some INCREDIBLE baseball! 🙂

“Fire will test the quality of each man’s work. If what he has built survives, he will receive his reward..”  1 Corinthians 3:13-14